Did you know that April is Sjogren’s Awareness Month? That’s right, according to the Sjogren’s Foundation, April was declared Sjogren’s Awareness Month in 1988 when New York Congresswoman Louise Slaughter read it into the Congressional Record.
The 2021 theme for this awareness campaign is Coming Together to Conquer Sjogren’s. When you post on social media or other digital platforms about Sjogren’s, use the hashtag #ThisIsSjogrens to highlight your personal experience as part of the campaign. The purpose of the campaign is to raise awareness about the complexities of the disease, and provide a voice to the 3 million+ Americans (and many more worldwide) who live with it every day.
As April is fast approaching, I wanted to share my personal #ThisIsSjogrens submission with the Autoimmune Warrior blog followers. Read my submission, below!
Current age: 28
Age when diagnosed: 20
Please finish with the following sentence: “Since I was diagnosed with Sjögren’s, I have learned…”
Since I was diagnosed with Sjogren’s, I have learned how important self-care is. Although you can’t let the disease rule your life, you must also learn to listen to your body and take the needed time to rest and recharge.
What are your 3 most difficult symptoms?
My three most difficult symptoms are eye dryness, mouth dryness and joint pain, although I also experience fatigue, brain fog and peripheral neuropathy.
What are ways that you cope with your most difficult symptoms?
For eye dryness, I use artificial tears eye drops several times a day, and I also take prescription eye drops to reduce inflammation in my tear glands. I also had punctal plugs inserted in my tear ducts to increase my tear retention. For mouth dryness, I use artificial saliva and take pilocarpine, a medication that stimulates saliva production, and I drink plenty of water throughout the day. For joint pain, I take a prescription medication that reduces inflammation and pain in my joints.
What is one of the ways that you’ve been able to effectively cope with symptoms during this past year in the pandemic?
During the past year of the pandemic, I have taken more time to rest which is helping to reduce my fatigue levels. Also, since I now work from home, I’m able to use a humidifier to humidify my home office environment, which helps with my dryness symptoms.
What is the best tip you would share with another Sjögren’s patient?
If I had to give a tip to another Sjogren’s patient, I would say to find a team of medical professionals who are familiar with the disease. Many medical professionals think that Sjogren’s is just dry eyes and dry mouth, and don’t realize that there is a lot more to the condition and the other symptoms it can cause.
How does the Sjögren’s community and the Foundation give you strength?
The Sjogren’s community and Foundation help to connect me with others who have the disease, so I can build a community around me of other patients who understand what I’m going through.
What do you wish people understood about Sjögren’s and how it affects you?
I wish people understood how much having a chronic illness like Sjogren’s impacts my health and day-to-day wellbeing. I might not be able to do things that I once could due to this disease, but I won’t let that stop me from achieving my personal and professional goals.
To participate in the #ThisIsSjogrens campaign, answer the questions in the Sjogren’s Foundation questionnaire and email your answers to firstname.lastname@example.org.
Beautiful Bride 🙂
I have Sjogrens too along with a few other things.
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Thank you 🙂 In addition to Sjogren’s I have another autoimmune condition called Hidradenitis Suppurativa. They’re definitely challenging conditions to live with!
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I have Celiac, Fibro, and Hypothryoid
Thank you for this! I was diagnosed with Sjögren’s in 2019, but my doctor didn’t offer any options for relief. I’m excited to ask about artificial saliva! I wake up every hour or two with dry mouth, so that could be a game changer for me. I hope that you continue to manage your SS and I truly hope the medical community can help us figure out the root cause… it seems like most people with one autoimmune condition have 2+, so it would be wonderful to help bring so many people relief. Thanks for what you’re doing here!
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